Gluten Challenge Question

[JamesF]

Hello, everyone.

Before I give a bit of background and ask my question, I'll quickly point out that I have two members of my family (grandfather and, more recently, sister) who are diagnosed with Celiac Disease. 

Background: I've a long history of gastrointestinal miseries.  I had a solid decade of chronic nausea, which led to a phobia of being sick.  That led to panic attacks given I'd be on the cusp of vomiting literally every minute I was awake.  It never stopped.  That led to agoraphobia.  Then suddenly it's all mental health and nobody's even thinking about other causes.  I was never tested for Celiac Disease.

One day, I decided to go gluten free, without actually expecting anything to come from it.  Long story short, within a fortnight my nausea had vanished.  I couldn't believe the improvement, and I stayed eating that way for some time. 

After a while, the phobia vanished, too.  This led to me being not quite so strict.  So what if I felt a bit rough for a day or so?  At the present time, I have some gluten daily - a small amount of a sauce with breakfast.  Maybe once a week, I'll get a takeaway curry that could potentially have some cross-contamination.  Sometimes I'll knowingly eat a McDonalds or a cake from the bakers.  I exist in a constant state of brain fog, and after the bigger gluten hits, the nausea and diarrhea often appear, etc.

Now, here's my question: I would like to get tested.  I know those on a gluten-free diet have to undergo a gluten challenge for 2-3 months, but what about me?  I get much less gluten than the average person, but the situation in the previous paragraph has been ongoing for much longer than the 2-3 months.  Probably over a year.  If I were to have Celiac, do you think it would show in a blood test now, or should I go heavier on the gluten for a couple of months?

Thanks,

James.

[trents]

Your testing would likely be compromised by a diet with only occasional gluten exposure.

But why do you need to be tested? You either have celiac disease or NCGS (Non Celiac Gluten Sensitivity), there being no tests for the latter at this point. The two share many common symptoms and the antidote is the same. Do you need an official dx in order to be more consistent with your gluten free diet? Some people do and in that case an official dx can be of help.

[JamesF]

26 minutes ago, trents said:

Your testing would likely be compromised by a diet with only occasional gluten exposure.

But why do you need to be tested? You either have celiac disease or NCGS (Non Celiac Gluten Sensitivity), there being no tests for the latter at this point. The two share many common symptoms and the antidote is the same. Do you need an official dx in order to be more consistent with your gluten free diet? Some people do and in that case an official dx can be of help.

Thanks, trents.

So much of my life has been dominated by this that I wouldn't mind a definitive answer.  Right now, I'm quite sure I've got a problem, but like the people you mention, I'd probably commit more fully to a big lifestyle change with a diagnosis.  Which led me to wondering if I might be in a position, given my patchy food choices, to skip a hard gluten challenge and just get tested immediately.  Gluten consumption being lower, but over a longer period of time.  Maybe the antibodies still show up.  I don't know. 

I feel people would take me more seriously with a diagnosis (some think it's in my head - don't forget that history of anxiety and panic attacks), and that I would take it more seriously, too.  I know it's stupid, but it's not that hard for me to shrug off a day or three of feeling sick.  If I knew for certain that I was doing serious damage to myself, I'm sure I'd avoid gluten completely.

[trents]

My concern is that if you don't commit to a hard gluten challenge before testing that your tests will be negative and you will be in a bigger quandary, an exacerbated state of limbo, than you are now. Yet, every time you give into yourself for a gluten indulgence you are, if you have celiac disease, rekindling the fires of inflammation that are damaging your small bowel lining and preventing healing.

The Mayo clinic official guidelines for a pretest gluten challenge is:

The amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks prior to antibody testing.

The amount of gluten equivalent to two slices of wheat bread daily for 2 weeks prior to an endoscopy/biopsy.

Perhaps you would do well to go for the endoscopy/biopsy as the gluten challenge is shorter. But you would need to talk your physician into skipping the antibody test which is, normally, the first step of diagnosis.

But what happens if you don't test positive for celiac disease? If you are symptomatic when eating gluten but celiac testing is negative then you should be diagnosed with NCGS. Would that be good enough for you? Would it give you enough motivation to be consistent with your gluten-free diet?

Also, keep in mind that most primary care physicians are not knowledgeable about gluten-related diseases. You may or may not get a good steer from your doctor. We find we have to go to those medical appointments armed with knowledge and willing to be appropriately assertive in order to get proper testing done.

[knitty kitty]

@JamesF,

You could do a genetic test for the most common Celiac genes.  You don't need to be eating gluten for a genetic test.  Although having the genes doesn't necessarily mean that the Celiac genes are active, but given your reaction to gluten consumption, I would say the genes are active.  Some doctors will accept a positive genetic test and a positive improvement on the gluten free diet to conclude a diagnosis of Celiac Disease.  

Do what you need to do to get a diagnosis satisfactory to you.  Every time you eat gluten and feel uncomfortable for a couple days, you are causing detriment to your health from which your body may not be able to recover fully with time.  Gluten and vitamin and mineral deficiencies caused by the inflammation of the immune response to gluten can precipitate a cascade of health problems as one ages.  

The mental health aspects are discussed in these articles.

Bread and Other Edible Agents of Mental Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/#!po=15.8088

And...

Neurological disorders in adult celiac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661192/

And...

Mood Disorders and Gluten: It’s Not All in Your Mind! A Systematic Review with Meta-Analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6266949/

And...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

Many vitamin and mineral deficiencies can affect one's mental health.  Without proper and prompt correction of deficiencies, the brain damage can become permanent.  

I have had panic attacks, agoraphobia, depression, etc.  I was given tons of pharmaceuticals that did not improve my health or mental problems.  My gastrointestinal symptoms were brushed aside and ignored while the doctors focused on the mental health problems and pharmaceuticals. 

I was not deficient in pharmaceuticals.

I was deficient in vitamins and minerals needed for proper brain function.  My brain health problems did not resolve until I went gluten free and corrected my nutritional deficiencies.  

Please take seriously what your body is telling you.  

[JamesF]

Thanks to both of you for your comments. 

Given the symptoms, family history, and how horrible I'm feeling for having a little more gluten than normal across the past couple of weeks, I'm now leaning towards just assuming I have Celiac Disease and avoiding gluten like the plague.  Being a bit dense (I'll blame the brain fog), I asked for and subsequently received one final message from the universe last night: gas, cramps and diarrhea within an hour of finishing a bottle of beer.

Knitty kitty: The thought of damage to the brain being permanent is enough to scare me straight.  I know for a 100% fact that mine isn't firing on all cylinders.  As I've said, there's a constant foggy haze.  Almost a wall between myself and being able to learn and understand things easily; articulate things to others clearly; remember what I'm doing half the time; etc, etc.  I almost feel like I'd fail a dementia test sometimes.  It never used to be like this, and I'm only 34.  I've wondered if it wasn't the small but consistent gluten that was behind it.  Not enough most of the time for a really obvious reaction, but sufficient to keep a fire burning.

I'm glad your brain problems resolved upon going gluten-free and properly absorbing nutrients.  If I can say the same in a few months or whatever, it'll be enough justification to never knowingly eat gluten again. 

[knitty kitty]

Found another article....

Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

 

I took high dose Thiamine (Vitamin B1), (more than 500 mg of thiamine HCl a day), so that my brain would function properly.  

I had improvement within hours of thiamine supplementation.  Later, I also took Allithiamine and Benfotiamine, fat soluble forms of thiamine that can get into cells easily.  Allithiamine crosses the blood brain barrier and can really help with getting your brain to run on all cylinders.

Here's more.....